If you have swelling, how do you know if it's LE or not?

Jennie, it does kind of sound like she triggered some kind of focal swelling, I'd recommend having the LE therapist examine it, knowing that many qualified therapists have a knowledge deficit about truncal LE as its not covered in the training.



I took, the full CLT course, last hear, and there was no training specifically around breast/truncal LE, and surprisingly around self MLD and home exercises. We learned the classic MLD sequences and bandaging and a tiny bit about compression garments. And I'm considered a qualified therapist and LANA eligible, so just know that a "well trained therapist " is kind of like a medical intern: they can get a license, but they need a lot more training and clinical experience.



I have residual cording and tightness and see a great LMT who is partially Vodder trained but the first session she did deep work on my arm, and we established guidelines. She consults with my LE therapist. The myofascial work is great, but should never, ever hurt.

Jennie, I'm not qualified to hazard an opinion on whether your symptoms might be LE, but I can tell you that my truncal areas feel tender when I have some swelling, and compression (for me, UnderArmour shirts) feels very good, not painful. Same with my arm. I don't need to wear my sleeve/gauntlet all the time, because my swelling is minimal, but I do get a burning, aching feeling when I've overdone it --too much activity, or just too long without compression--and putting the sleeve on definitely makes it feel better.  I'll wear the sleeve for a few days (not nights..then I use a Solaris Tribute night garment, which I wear every single night while sleeping), and I get my arm back into shape. Then I can go another few days without it, so long as I'm not doing crazy heavy lifting or repetitive activity.  

I think most of us would say that compression gives relief, so I hope you'll give it a try to see if it helps. Options include not just UA shirts, but also compression camisoles or other shapewear. The trick is to find something that fully covers your problem area, and we all find ourselves doing a lot of trial and error of garment choice. 

Jennie~  Another thing to consider is bursitis.  I have had both bursitis and LE, and your post reminds me more of how my bursitis felt.  You can google it to get a better idea about it.  Good luck and feel better!

Im with Carol. Doesnt sound reasonable to me in fact its sounds highly unreasonable. LE is not something you want to "wait and see" with. Where  LE is concerned, much can be said for taking preventative actions. 

Jennie, I have truncal in addition to my upper arm. They cannot measure, as they can for our arms, and therein lies the big challenge. An experienced LE therapist will listen to your description of symptoms and also feel the texture of your skin and tissue where you have issues. Here's a wonderful description of the challenge and the diagnostic criteria, from Joe Zuther, who owns one of the lymphedema therapy schools and gives a lot of information to us via his blog:

http://www.lymphedemablog.com/2011/10/05/lymphedema-affecting-the-breast-and-trunk/

It can be incredibly frustrating to get a diagnosis of breast or truncal LE!  I think most of us feel a slight or large burning sensation, and for me, the area just feels itchy and jiggly, even if I cannot see any puffiness. I notice that when I'm particularly active, wearing my sleeve and gauntlet, it seems like the compression there pushes fluid to my undearm spot and to a certain spot near my shoulder blade.  It took me a long time to make that connection.  For months, I was thinking that my speed walking was giving me an odd backache near my shoulder blade, and then it finally hit me like a ton of bricks--this could be the LE.  I contorted my other arm around to feel the area, and son of a gun...squishy feeling.  Binney suggested putting a swell spot or similar (bumpy foam chips sewn into a little pouch of sorts) over the area, and I did that, holding it in place with a compression T shirt.  Miracle! The spot went away. Temporarily, of course, which is the irritating part of this.

I now understand that that bit of my anatomy is always going to collect some fluid when I'm active.  The answer is to do manual lymphatic drainage to give it somewhere to go, and frankly I find that tedious so I skip it a lot (my bad!!).  Plus, my wonderful DH is away three nights a week on business, and I cannot do MLD on my back by myself, so mostly I just live with it.  I have learned that I can minimize the problem by wearing a compression shirt when I'm active, in addition to my sleeve and gauntlet. The compression doesn't give the lymph as much room to collect, compared to when I am not wearing the compression.

Many of us find also that wearing a bra compounds truncal LE, because it cinches us in a full circle right in the lymphatic pathways.  I'm happier if I wear a cami instead of a bra, because I can still get some support, but the 'cinch' is spread out over a larger area of my trunk. In summer that's hot as heck, however.  If not in a cami, when I'm in casual attire, I wear the compression T shirts instead of a bra.  Not one to be seen in skin-tight shirts out of my house, it means I've got a T shirt on, too...same problem in hot weather.

So, to answer your questions specifically, it's best to be evaluated by an experienced therapist who will know what LE tissue feels like and most of all, who can put all your symptoms in perspective.  If she/he thinks you've got truncal LE, you'll learn manual lymphatic drainage, which will help give the collected lymph somewhere to go. You can experiment with compression Ts and camis to see if that holds the pooling lymph in check, and you can try various swell spots or other products designed also to interrupt the pooling.

There's lots of misinformation about LE 'out there' so I'm not surprised if your medical team doesn't think it's LE, even if it turns out to be exactly that.  And unfortunately, we have to be careful in our choice of LE therapists. They're not trained much in truncal, as I think Kira has explained, and in the dedication-to-learning department, they're human like the rest of us, with all the expected variations in interest in pursuing more knowledge and skill.  Some of us have met some real disappointments, shall we say, and had to look elsewhere for more competent help.

Do take a look at what Joe Zuther published, and perhaps print it for your MD to consider.

Keep us posted.

Carol

Jennie, I know that compression sounds horrid when you're thinking of a tender area like that, but might you just experiment to see if it actually might help relieve the tenderness? The effect might surprise you.  I'm trying to think of what you could do to apply some compression for a few hours, that would not add to your misery in the putting-on an taking-off effort. I can see how dragging a compression shirt over the area could be painful if it's tender, although once in place, things might settle down in ways that would surprise you. If by chance you have a shaper cami at home, those are usually step-in garments, so you can hold the garment away from your skin until ready to just snug it in place. That only works if the cami covers the trouble spot, of course. If a seam or an edge touches your tender spot, it will hurt, so the idea is to find something that compresses the tender area plus a bit of a margin.

All this guessing is so incredibly frustrating, and of course, your MDs could be right and it's not LE.  I just wish you had a chance to meet with a truly qualified LE expert who could assist you. He/she could do manual lymphatic drainage and teach you to do it yourself, if it looks like LE. That's usually done along with using a compression strategy, but even without compression MLD would give you some relief...if this is inded LE, which is the make-you-crazy question.

Carol

Jennie, it's progress that you have a referral to a LE specialist, because we can hope you'll get some accurate information now!  Think about an UnderArmour compression T shirt--you'd get compression all over; armpits won't be partially covered.  No bra, just the shirt, perhaps inside-out to keep the seams away from your tender spots.  If you try this --available at lots of sporting goods stores--get a men's or boy's size, because the women's shirts have cap sleeves that cut into the armpit.  The mens/boys sizes have slightly longer sleeves.

MLD is very gentle; very light touch.  Your MO apparently knows 'of' MLD but not the finer points.  The LE specialist will know and show you what you need to do.  It should not hurt.

Please do keep us posted, and I hope that LE therapist appointment does not disappoint!

Carol

Jennie it is from solidea. They do not make anything for the pit. I use a cut up abdominal band for my swollen breast and wear the sleeve for a night sleeve. I have used a scrap of the fabric between by sleeve and bra for the pit. It's something you could sleep or sit around the house in.